Comparing quality of life following simultaneous pancreas and kidney transplantation and kidney only transplantation: A qualitative interview sub-study of the ATTOM programme

Background: Simultaneous pancreas and kidney (SPK) transplantation is increasingly used as a treatment for chronic kidney disease in people with Type 1 diabetes, but there are few studies about its effect on Quality of Life (QoL). As part of the NIHR-funded Access to Transplantation and Transplant Outcome Measures (ATTOM) study we interviewed patients from 7 treatment subgroups including SPK recipients with diabetes or deceased-donor Kidney Alone (KA) recipients without diabetes, investigating and comparing the impact on their quality of life (QoL).
Method: In-depth interviews with a purposive sample of 10 KA and 10 SPK transplant recipients were conducted 13-18 months post-transplant. Semi-structured phone interviews examined the impact of diabetes and the renal condition and associated treatment on QoL. Interviews were transcribed and coded thematically, using an interpretative phenomenological analysis approach. Results: Two main themes emerged. Theme 1 focused on the need for both groups to hold realistic expectations of transplantation. Being advised of potential risks and problems was advantageous, whilst patients who held overly optimistic expectations reported poorer QoL post-transplant. Theme 2 focused on anxieties about transplant failure. Although having an SPK transplant reduced the negative impact of their diabetes/renal conditions on QoL, patients were far more anxious than KA recipients about transplant failure. Two thirds of SPK recipients reported checking their blood glucose levels regularly or avoiding sugar intake post-transplant, believing this will protect the transplanted pancreas. An awareness that the pancreas may fail in the future was commonly reported. In contrast, only those KA recipients who had received a previous kidney transplant raised the possibility that their transplant may fail. Implications: Appropriate information needs to be provided to manage expectations of transplant for all patients. It is important to recognise that SPK patients have more adjustment challenges following transplant and some seek a more active role. Discussion with patients is needed about how their newly transplanted pancreas and QoL can best be protected.